“I’ve learned to accept the diagnosis in the past four years but still it can be hard…”
Alishba Kazmi, Partial Trisomy 13, 06/04/2014, Winchester, VA
Our story starts the day Alishba was born. All of the anatomy scans were normal during the pregnancy. I had two children from before who were fine so there wasn’t any reason to believe that there was something wrong. The first sign was that she had an extra digit on every limb. My husband didn’t even tell me until the nurses took me to our private room. Obviously I was in awe. The second sign was that she wasn’t able to swallow milk without choking on it. The next morning, they gave us more devastating news. The front suture of her skull was closed, which meant she would need surgery before she turned one. It just felt like a fist fight would have been less painful than the punches that we were getting left and right. The only thing we knew beforehand was that her kidneys had a little bit of water in them but apparently that can happen even if everything else is ok. They decided to do some genetic testing and two weeks later we were told that she was unbalanced because she had a partial extra chromosome 13. The doctor looked into our eyes and told us point blank that there were going to be severe delays. It’s moments like these when you know that your life is never going to be the same again. It felt like someone shot me in the heart. Maybe life was too smooth before and this just had to happen because we’re much stronger and braver than we thought. I’ve learned to accept the diagnosis in the past four years but still it can be hard to acknowledge the reality of our life now. She went on to have her cranial reconstruction when she was one and had to get a g tube when she was nine months old. She can crawl but is still getting therapy for walking and maybe one day, talking. Both of these skills seem far fetched right now but we try to be hopeful everyday. The question is why did this have to happen and I’m constantly searching for the answer and most of the time I tell myself that this is a test and it’s these types of challenges that make us stronger in life. There are times when you don’t want to do it anymore and you want to give up but that’s the moment you have to push yourself even harder.